I get a lot of unsolicited advice on dealing with Tim.
Most of it is meant with good intentions, I know that. Rarely do I get comments from buttinskis that mean their advice more to admonish my parenting than truly be helpful. Those are usually the people that have no freakin’ idea what we’re dealing with. I don’t get those anymore – mostly because, a few years ago, we stopped going out in public with Tim if he was unstable.
I get the good intentioned kind all over the place. My mother-in-law, bless her heart, truly means to be helpful when she comes to visit and, after being here for about a day, starts every fourth sentence with, “Maybe if you tried….”. I know she means well, and I know she does it out of love and a desire to be truly helpful, but it makes the hair on the back of my neck stand up.
Neighbors and friends sometimes offer ideas as well. I know that when these tips come, they come out of a place of support and sympathy.
I get comments here on the blog and emails from readers about alternative medicines and therapies, “new age” type stuff from all corners of the ether about cures, misdiagnoses, supplements, and how I’m “poisoning” my child with antipsychotic medication. Again, all come to me with a tone of support and desire to be helpful.
Please know – I appreciate anyone who takes the time to send me an idea, an article, advice, or something else to try. But just for the record, let me run down all of the techniques, medications, supplements, diets, and therapies we’ve tried to date:
- Ritalin (that was a wild ride)
- Seroquel (regular and XR)
- Thorazine (which is still used for severely violent psychotic episodes only)
Supplements / Vitamins
- Vitamin E
- Vitamin B6
- Vitamin B complex
- Fish Oil
- Vitamin B12
- Cognitive Behavioral Therapy
- Talk Therapy
- Play Therapy
- Occupational Therapy (for sensory integration issues)
- Speech Therapy
- Sensory Integration Therapy
- Points Systems
- Risk/Reward Technique
- Positive Parenting Technique
…That’s the bulk of it, but not the entire list. We haven’t tried each one individually, either. We’ve mixed, matched, taken out what hasn’t worked, added others. Right now, Tim is on a combination of Clozaril, Vitamin E, talk therapy, speech therapy, occupational therapy and point system.
I sometimes react badly when people try to give me unsolicited advice. Let me first say, I’m sorry. I don’t mean to seem ungrateful or annoyed by your attempt to be truly helpful. But please remember this – I belong to several different organizations dealing with children’s mental health, I belong to two support groups, I’ve read every book ever published, nearly every theory posted to the internet, and we’ve tried what sounds like it may have promise and discarded what sounds hokey. We have more than four doctors on “staff” and we’ve gone through more than a dozen others in three states. We’ve had more consulations and evaluations than I can count. It’s highly unlikely that what you will suggest we haven’t researched and either implemented or discarded.
My kid is on meds. Very heavy duty, atypical anti-psychotic medication. A medication with FIVE black box warnings from the FDA. And, right now, it keeps him from alternately trying to kill us or himself. Nothing else has.